BARRY’S JOURNEY No. 25

Falling and rocking

Barry is getting really unsteady on his feet since his doctors cut down on his medications. I can’t help but wonder if we now are seeing the true symptoms of frontotemporal dementia (FTD) that the medications may have masked. He is walking slower and quite deliberately pausing which each step. He also just sits down without looking and often lands on the arm of the chair or the floor. He said f*** you to me a bunch of times during one of my recent visits. I have finally figured out that he swears when he is scared or frustrated.

Last Thursday, he landed on the floor in the dining room after missing the chair. Barry did not get hurt, but the care center is required to call me about such incidences. The next day, I arrived to find him stuck in his chair, sweating and beet red in the face as he rocked back and forth trying to get up. He seriously has abs of steel now from doing all these crunches on the arms of his chair for hours a day while trying to get up. After the nurse and I changed his sweaty shirt, he seemed okay and was starting to relax. I left him at the dinner table with his chair pushed up against the wall and went home to do some drawing for a project.

Don’t answer that phone

Later that evening after working and beginning to settle in with a cold beer, my phone rang. I didn’t answer it. In fact, I didn’t even look at it. Being so in debt, my stomach turns each time my phone rings. On the other end of the line is usually a bill collector waiting to ruin my evening — and I ruin theirs by not answering. I forgot about the call until I was eating dinner and noticed it was from Barry’s care center. The message said he was in the hospital because he had taken a big fall right after I left and cracked his head open. Now he was in the emergency room at a certain hospital (which I do not like), alone, nervous and very confused.

I rushed to this hospital where I always seem to be only late at night. Makes sense since dementia patients tend to become most confused, fall or act out after dark. The most irritating thing for me about this hospital is that you never get to talk to a doctor. The nurses are great, but it’s like The Wizard of OZ where the great and mighty doctor is behind the curtain somewhere never to be seen.
all of us
The hospital was packed with sick and hurt people, but Barry got a room like always because of his dementia. That’s one good thing. I found Barry holding a stuffed animal that some nice nurse had given him. It nearly broke my heart seeing him holding the toy and looking so scared. Barry had been here three times already; it is the go-to hospital his care center uses. But when are they going to learn how to take care of dementia patients? Barry was confused, needed changing and was put in a room with the television turned to the Family Guy show. How about some soothing music instead?

In order to perform a CT scan on his head injury, the staff gave him something to relax. At first, it did not work. He remained so agitated that they had to give him more. I watched as he soon relaxed. His eyes grew heavy, then he was finally asleep. My first feeling was relief as I watched Barry in a peaceful sleep. Then I realized that cutting down on his meds has done nothing but make him more uncomfortable and unable to ever relax. In this long journey, I had not seen him totally relaxed until this moment. He was even snoring!

Time for hospice?

As I sat there, I thought that maybe it’s time to focus on Barry’s comfort — no matter what it takes. His scan was normal, so they sent him back to the care center. I went home with much on my mind.

Is it time for hospice and what exactly is that like for a guy with FTD? Is there some protocol or guide for this phase? Barry may be sound asleep, but I was lying awake with a lot to think about.

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